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HealthI am an 18 year old girl who has been living with chronic hives for the last 8 years, AMA!

Nov 27th 2017 by annshocko • 49 Questions • 3540 Points

Backstory: When I was 10, I began getting hives until I was completely covered. The doctor diagnosed me with Chronic Urticaria and Angioedema. He told me it would be gone in 2-3 years. Not everyday is a bad day, but 99% of the mornings I at least wake up with them on my legs. There are many triggers and not many ways to make them go away.

Proof: If you don’t handle gross (Edit: mildly weird looking) too well, then click this with caution.

Edit: Thank you all so much for the wonderful feedback! A lot of great recommendations, ideas, compliments, and questions have come in tonight. I thought only a couple people would see this, but I just spent hours trying to answer every comment and having a blast! Not to mention I got gold! So many of you have really improved my outlook on my situation, and hopefully I can take a lot of these ideas with me and get something good to happen :) I’m so happy to have so many people participate. Xolair was a big thing to come up tonight, and I absolutely plan on trying this. Diets, home remedies, acupuncture, marijuana, and more will be looked in to! Someone mentioned that if I find big results with something, then I should do an update AMA, and that can be done! It’s currently 2:31am and I have class in the morning, so I will get to all my messages and any further comments tomorrow:) Thanks again to all of you! You helped a girl have a great amount of fun tonight!

Q:

Have you ever considered that you might just be a pink giraffe?

A:

This is a huge development.. I can’t believe I have never considered this before... Maybe it’s like Animorphs, but I never fully get to my final form


Q:

Considering how long you've been dealing with this, have you developed a tolerance for the pain/discomfort, or are you as sensitive as when it first began? Do you find yourself less bothered by other source of pain/discomfort as well? Would you say your are mentally hardier because of this?

Since winter started I've been thinking a lot about people who live in colder climates and how their tolerances come about.

A:

I would definitely have to say I have gotten better with dealing with the pain. I used to be really scared of them and would cry from how they felt. Nowadays it’s just second nature to feel like this. On bad days, it’s very hard for me to move though because of how irritated my skin can feel when it’s really bad. Also, ones cause by heat get very itchy, and you can never really get used to that specific feeling. But, I would say my pain tolerance has increased in other situations.

This winter has been odd however, because my condition seems to be worsening out of no where. I haven’t seen a doctor in a while because there was nothing else he could tell me, so I’m trying to get insurance so I can see someone again. But, it’s quite cold here, and I have to sleep in shorts every night to try and stay cooler so I’m not too covered in the morning.


Q:

Going to the allergist in the morning for the same thing. I've doubled up on Allergra and Zantac every morning and night. When I break out, I lay down, calm my breathing, and try to stay cool. Everywhere I scratch or clothing rubs me, I break out.

I've had a few patches in my life but it got really bad a few months ago. I took a shower and my whole body broke out. My voice started getting raspy so I went to the ER. They gave me IV meds and I passed out. Hooked me to oxygen and I woke up. Now I have an Epipen.

The double meds at night and morning help. I've been doing better. They gave me Prednisone but that lowers your immune system over time. I'm pretty sure anxiety and lack of sleep play a huge part in the breakouts. They did an allergy test and I reacted to everything. But then they found out that the needle picks actually caused the reactions.

I wish you the best and if you're interested, I would love to communicate after the dr tomorrow and update you with my situation.

A:

Talking after your doctor visit would be wonderful! Please feel free to PM me, I would love to hear any developments! I’m sorry you had to go through that. I also don’t sleep as much as I probably should and my anxiety certainly doesn’t help either. I have so many things that trigger my hives that it’s hard to even go through one day lately without having at least one small batch of them. I hope you find out something great tomorrow :)


Q:

“... I’m trying to get insurance so I can see someone again...”

As an Australian is this is a really distressing thing to read, and my heart really goes out to you and anyone in a similar situation.

A:

I really do wish I lived somewhere with better healthcare, but sadly I’m doomed with thousand dollar bills to try and help myself out. I have to get a tooth pulled soon (unrelated to my disease) and i’m worried that it’s gonna cost a fortune. I’d love to love to Canada, which I practically live on the border, to try to help with these costs!


Q:

What's for favorite meal for dinner?

A:

haha, thanks for this question~ i absolutely love hot wings!


Q:

I was just now wondering if spicy foods affect you - surprised to read you love hot wings. Are there foods that are sure-fire triggers for you?

Also, since it looks like you might be a gamer, should I get my 12 yo son Battlefront II for Christmas?

A:

I’ve never looked too deep into food causes. I know too hot of a sauce can cause my lips to swell a little. I also tried to cut out gluten because we thought I might have celiac disease, but multiple tests ruled that out. Also, I have been told to go on different diets, but I am extremely underweight for my body type, so I’m not really in the position to do that.

Also, not the biggest gamer, more of an appreciator of them! Was never able to get myself a counsel or a good enough PC haha. But, if you son is a fan of a series or star wars, then he’d probably enjoy it, but EA really screwed up with that game and there are many in game purchases. I’d look into that before making your decision :)


Q:

How do you deal with being itchy all the time? Is it more annoying than anything?

A:

It’s really odd, but different triggers cause different hives. The ones caused by heat almost always itch, and those are the absolute worst. Unlike in the photos, those ones are very small and more 3-D, and itch like crazy. The other ones are mainly uncomfortable, and are a little itchy, but I’m sure I’ve just grown used to it.


Q:

I fucking hate when im hot and get itchy. I feel so bad for you :(

A:

It’s the worst :,( But, as bad as the last 8 years have been, I’ve grown a lot stronger from it, and a tolerance has been built!


Q:

question for you : do you ever get hives that look like squiggly lines or are they always round? I used to get breakouts that looked like squiggly lines and I would only get them when I was under stress. They were raised and red. Usually on my back.

A:

They are usually in a round shape, but they can sometimes be in odd patterns. I’d relate it more to a cheetah’s spots. If you click the Imgur link, the photo of me pushing my hair back- you can see on my arm the kind I’m talking about. Also, I do as well get hives from stress (usually from school), and it’s always on my forehead. I like to say it’s because my brain is thinking too hard lol


Q:

Do you ever have breathing problems?

I have been dealing with similar issues for the past year and am currently covered in hives but this time i had bad breathing problems.

Also I seem to be allergic to sunburn. If I get a sunburn, the itching is almost unbearable. Does this ever happen to you?

A:

I do have both of these problems! Sunburn is the worst, because you can’t itch it because it hurts so bad. I’ve had that happen on two occasions, both times I forgot to wear sunscreen and was in direct sun for wayyyy too long. Dumb on my part.

I have also had breathing problems for a very long time, but I have yet to find a direct cause. I have been tested for asthma multiple times, but they say I’m fine. I believe Angioedema does cause breathing problems though, because that is swelling on the inside. If I were you, I’d look into that or both of my diseases. If you will see a doctor, ask about them as well. I used to take medicine for it; Zyrtec, Zantac, and Albuterol. I went off of it because I needed blood work and it seemed like they were unnecessary. I hope your condition gets better soon :)


Q:

So far, doctors have told me I have: Idiopathic Anaphylaxis, Crohn's Disease, Schogren's Diaease, Elhers Danslose Syndrome and a host of other auto-immune problems, but none of the treatments seem to work.

Mine thankfully is not as frequent as yours seems to be, and I hope you are able to find aome relief.

A:

My brother has Crohn’s disease, so I just wanted to say I really hope that gets better. He was diagnosed around when I was, and it was really hard seeing him go through that and surgery.

Thank you so much for your well wishes, and I hope your issues begin to clear up. Try to keep your head up through this :)


Q:

Is there hope of it going away at some point?

A:

Sadly, we are unsure. I’m looking into seeing a doctor again, but there have been obstacles. My first doctor originally told me 2-3 years, and that was hard to deal with. I’ve heard of people having theirs for 20+ years, so hopefully mine either goes away soon or I find a way to control it better at least. I have anxiety issues, which doesn’t pair well with my hives. I can’t really do anything too crazy without completely breaking out. I just gave a presentation; woke up covered in hives, left the room even worse. Went on a date a couple years ago to the movies, left completely covered. Went on vacation, when I got home I broke out. It’s hard to do daily stuff, so yeah. TLDR; Not sure now, but hopefully


Q:

I also have CIU. Have you checked out Xolair? I get a shot every 28 days. After the first two shots, I haven’t had any hives at all. I still take Zyrtec, Xantac, Allegra, and Claritin every day. I also smoke (medical marijuana) most nights if I do have a small breakout (normally knees and ankles). The high CBD and low THC strains make them go away.

Good luck! I feel your pain.

A:

I had someone else recommend this earlier, I hadn’t heard of it! This really does seem to be like a miracle drug and I would love to check it out and see if I can get it! Also, medical marijuana was just passed in my state, so I could possibly try to look into that as well :)


Q:

Looking at all these responses, this Xolair may be the fix. Please do an update AMA after seeing your doctor. I've never seen so much sudden support for one specific solution.

A:

If I am able to get on this medication, then I would love to do an update!


Q:

This may be a bit personal, but are you able to be intimate with anyone/have sex? If so, is it very uncomfortable for you?

A:

I haven’t even kissed anyone before, so this really isn’t a question I can answer haha


Q:

I honestly don't see anything gross, but I'm guessing you have "bad days"? What are those like and how do you deal with them?

A:

The photos I posted were all from my pretty bad days. Those normally come about when I’m sick. The hive can feel so much different between a regular day and a bad day. On bad days, it can be very hard to move because of how much more sensitive they can get when they’re all over your body. Different triggers cause different hives. I typically just wait it out and take some Benadryl, so I sleep a lot of the day. Missed a lot of school from that


Q:

I also didn't think you looked gross at all, I thought your spots were cool and that you look beautiful! It's like you are part leopard. It sucks they are so uncomfortable. I hope one of the many suggestions in this thread turns out to solve the issue for you - good luck!

A:

This is very kind of you! Many people have noted that it’s not as gross as I believe they are, which is relieving!


Q:

Have you tried Xolair?

A:

I have only tried Zyrtec, Zantac, Albuterol, and Benadryl. I will try to look into this medicine. I have had multiple recommendations and am very thankful for them! Do you have any history with this medicine? How does it work for you?


Q:

Yeah I tried all of that stuff too. I also had heat related idiopathic urticaria and started Xolair about 2 years ago. Haven’t had a problem since. Get a shot ~ 2 months no hives, no problems!

Seriously look into this. I’ve never heard of it not working for someone!

A:

Thank you so much for this idea! I had heard of shots before to help this, but never knew the specific kind to try because it was just family friends giving me worn out info


Q:

It's seriously a wonder drug. Exorbitantly expensive if you don't have insurance, but they have a program to help people without insurance pay for it.

Seriously look into it OP. It has the potential to cure you like no other med does. I have an allergic disease called mastocytosis, and went from being essentially homebound to feeling 90% normal again.

A:

I’m so happy that it has worked for you! This is for sure something I plan on looking in to, and hopefully once I get insurance I can give it a shot :) (pun absolutely intended)


Q:

Lol. This is the website for financial assistance in case your insurance doesn't come through! https://www.genentech-access.com/patient/brands/xolair/patient-assistance-tool-page.html

Also the only downside of the drug is it takes 3-4 months to work, so keep that in mind if you do wind up pursuing it.

A:

Thank you so much for this!!!!


Q:

I have no question but I just wanted to say that I really hope you can try this and that it'll work out. I can't even imagine what a tremendous benefit it would be for you to be able to not have to worry about hives anymore, and I'm really glad it seems like you've found another avenue to pursue in treatment of the condition. I wish you the best of luck.

A:

You’re a wonderful person and I’m very thankful for your input! Thank you!


Q:

You still know you're beautiful right?

A:

This extremely kind and wonderful for you to say :) Thank you !


Q:

Have you ever been held back due to your hives? Like going out and doing what you want, or making new friends? Anything of the sort. Also, I hope things get better for you.

A:

School was hard for a while because I was afraid to show myself with them. By senior year I stopped caring and would only stay home if they were super bad. Dating has been especially hard, due to both my anxiety and the fact that anxiety causes them. So, I just try to steer clear of it entirely because I’m afraid of these new situations ending badly due to it. Some days I do have to stay in while my friends have fun cause I know I’ll get them, so it really does suck those sometimes


Q:

What kind of psychological things do you experience? How do people initially react?

I hope you know that you are absolutely stunning and beautiful! 💕

A:

I do have anxiety issues, but do not take medicine for my moms personal reasons. People often get worried when they see my hives, but once they know i’m okay then it’s not the biggest deal anymore. Thankfully I was never bullied due to hiding them from the public for so long, but nowadays I just don’t care as much, and no one has approached me about them!

Also, you are so very kind and sweet, and it makes me incredibly happy to hear you say such nice things :) Thank you so much :)


Q:

Its not gross. You are not gross. Does it pain you?

A:

It is extremely uncomfortable, and sometimes itchy!


Q:

You said heat causes breakouts, do you live in a warm place?

A:

I live in very northern USA, so it’s summer for about a month. When it’s cold, I can’t use too many blankets or wear too much clothes. Just wearing pants for too long can cause them, which is pretty much by the end of everyday. In the summer and sun, I can’t be in the sun too long or else I’ll have really itchy hives. I also have fair skin and burn easily, and let me tell you- hives on a sunburn is a recipe for disaster. I once spent hours in the sun cause I was dumb, and actually had my sunburn swell up in the exact shape of my sunburn, no swelling where I was covered up. It was the worst lol


Q:

What percentage of the day do you not have hives? And the doctor said it would be gone in 2-3 years when you were ten. Looks like you're past that estimate now. Do doctors think you will still grow out of it one day?

A:

Lately, the hives have gotten worse. But, I normally wake up with them on my legs, and then sometimes on my arms or cheeks. Sometimes they’ll be on one side, probably indicating that’s the side I slept on. They’ll slowly go away during the day, and by 12 or so they’re usually gone. They’ll return at night before bed after wearing pants for too long. Sometimes I’ll get them at school from stress.

Also, my doctor was a total ass and super condescending to my mom and I. We stopped going to him after about 2 years, and haven’t really seen a doctor about it since cause they’ve been under control. But, now that it seems to be getting worse again out of no where, we are considering seeing a new doctor. So hopefully they have a new solution this time around!


Q:

Absolutely, definitely see a different doctor. But don't stop there; see 3. I've learned that with uncommon situations like these, getting a second (or more) opinion is worth the hassle.

Also get them to do allergy tests! If your previous doc didn't, that could literally be the missing piece of the puzzle.

A:

Many people here have recommended allergy testing, so that really does seem to be the next step in my hive journey. There is a doctor near me that my friend recommend, so I’m looking into seeing her soon! I also plan on meeting with the rude doctor again just to show him my current state and see if he has any current ideas.


Q:

I was in a similar situation for a few months. Chronic hives with similar timing for flare ups. Doctor had me on several antihistamine and steroid cream. It kept getting worse. Turns out I developed a soy allergy. I was taking a prenatal vitamin at night that was mostly made if soy. I know everyone’s situations are different but thought I would share my story just in case.

A:

I’m super glad you were able to figure out what was wrong! I hope you are able to live a life without hives anymore :)


Q:

9/10 would totally give soothing oatmeal massage <3 Chronic hives, asthma, hay fever here. Shit's ridiculous and I don't even get close to as bad as you get. Mine just show up on random occasion. I have cold urticaria too. How do you treat them?

A:

I have cold urticaria as well! I haven’t had that kind as much though, since I try to stay out of the cold for too long (i live in northern USA). When I was first diagnosed, I had to take 7 pills a day, and then Benadryl if necessary. I’ve since stopped taking all the pills, and usually just take Benadryl, but it doesn’t help as well as it used to. It usually just takes time, usually 2-3 days tops for bad cases to completely go away.


Q:

Did you ever take Famotidine? I had urticaria for about two years and took that with Zyrtec everyday, was exhausted all the time, sleeping too much from the drowsy meds. I’m sorry you’re having to deal with it, hives really suck!

A:

I actually have not taken Famotidine, but I will certainly look into it. I used to take Zyrtec twice a day for about 2 years. What’s strange is that now whenever I take it, it causes me to break out in hives. It has happened the last two times I took Zyrtec, I hadn’t taken it since my routine taking it. Super afraid of medicine now lol. Also allergic to most pain medicines, I can only take tylenol.


Q:

Do you ever get sick of people telling you some insane quack theory as to why this happens and what supplement or holistic thing you have to do to solve it?

A:

Kinda lol, I’ve had a lot of super random “solutions” recommended over the years, and it’s a little rough explaining myself over and over again haha


Q:

So I am late to the party but have you heard of Hashimoto's Disease? I'm not a doctor but your experience sounds slightly similar to mine.

I had chronic Urticaria and Angioedema for about 4 months before being diagnosed with Hashimoto's. My doctor originally thought I was allergic to something so I ended up at going to an Allergist. I never got the allergy test done (all those shots) instead I got some blood drawn. My allergist found antibodies associated to an autoimmune thyroid disease in my blood which a pretty clear link to chronic hives and angioedema. I then got into an endocrinologist and got put on thyroid meds and now my hives are gone! It was like a miracle, I woke up one morning and the hives were gone.

Also have you noticed any triggers to the angioedema? I found out that taking naproxen or ibuprofen would trigger it and so now I stay far away from those pain killers.

A:

Pain killers I found out very early on are horrible triggers, and basically turn me into a walking red marshmallow. Also, I do believe I have had thyroid problems tested and nothing came of it! But, I’m glad you found your solution!


Q:

I had hives or angioedema (most often lips) nearly every day for a year. The only trigger I noticed was pressure. So if I bit my lip accidentally it instantly swelled up, or once my arms did from helping a friend move after carrying boxes on them. Often my skin would swell somewhere without an obvious cause though. before my allergist found a combination of allergy medications that blocked the reaction. My allergist tried many drugs before discovering that cetirizine HCL or Zyrtec blocked the reaction. Have you been to an allergist to try lots of medications to see if anything helps? I would try everything there was until I found a cure.

A:

Sadly, I haven’t really been able to get to many doctors for this specific issue of mine. It’s just kinda been something I live with. I also have pressure problems with mine; it’s actually something called Dermographia if you haven’t heard of it. It’s pretty much if you apply a little bit of pressure it begins to swell, which seems pretty on par with what you described! I would get bored in class and draw little shapes on my arms hahaha. But, Zyrtec seems to have turned on me after being my daily medicine and actually causes hives, I really have no explanation for that


Q:

I have dermographia and tight clothes are the worst. I posted up a little higher about reacting to Benadryl, but I also had to stop taking Allegra also. I’m sure we all have our quirks, but I can’t take any medication on a daily basis. You may want to rotate your antihistamines. Also, many medications for acid reflux have antihistamines of a different type and I’ve had luck with them.

A:

I currently haven’t been on any daily medications, and I only take Benadryl if I have to because I hate the way it makes me feel. Also, tight clothes are the wooooorst


Q:

It's a difference of genetics. Some people have paradoxical effects from medications and they cause what they are supposedly alleviating. Due to a misunderstanding, I tried to wean myself from Zyrtec by going every other day, then every third day. My swelling returned with a vengeance and my doctor told me that I could go to perhaps 5 mg from 10 mg, but that I should always continue taking it daily or it might stop working for me. I've been on it 20 years now.

A:

I’ve been meaning to try and take Zyrtec again soon, to really see if it’s causing hives again. My mom is convinced it’s just a coincidence. But, I’d prefer to not have a bad day, but it’s for science!


Q:

Have you posted here seeking advice?

r/AskDocs

A:

I actually have not! This is an awesome recommendation, and I’ll certainly try that out once this AMA dies down in my notifications :) Thanks!


Q:

do you have to have a strict diet? Like cold foods in summer, hot in winter etc. My sister gets minor reactions from food depending on the weather.

A:

I really don’t eat too much tbh, but no real restrictions. I’m super picky haha, but many people have considered changing my eating habits!


Q:

Have you ever seen the movie "Fat, Sick and nearly Dead"? Joe Cross (the filmmaker) had your exact condition and got rid of it by changing his diet. Not sure if yours might be caused by the same thing? You can watch it for free here: https://www.rebootwithjoe.com/watch-fat-sick-and-nearly-dead/

A:

I actually have this DVD sitting on my TV stand right now! I just am suuuuper lazy and haven’t wanted to sit down and watch it! It’s my moms coworkers DVD and she wants to back, but it’s on Netflix I believe, and you provided a link, so hopefully I can get to that soon!


Q:

Question as a veterinarian - why can't they just give you prednisone (or other steroid?) for as needed use? Does it just not work? Or would you be using it so much it would be a problem?

I ask because you mention you are underweight, so the appetite increase/weight gain wouldn't be an issue, it's dirt cheap, and that's my number 1 go-to, especially with financial issues, for the "random hives" dog. Horses, too. Just curious.

A:

Prednisone I have heard can weaken your immune system more the longer you take it, and I’m also a little worried about the weird side effects it can give you. I used to take a steroid in the beginning, but I really can’t remember what it was called. Also, I haven’t talked to any doctors about my condition in a while because it hasn’t been too bad, so no one has attempted to prescribe me anything


Q:

Favourite Star Wars film?

A:

Return of the Jedi! (I actually haven’t seen all of the movies, but this is my favorite out of the ones I have seen!)


Q:

What's your favorite movie for a rainy day? Also what's your go to comfort food?

A:

I really love The Rocky Horror Picture Show, 50 First Dates, or some goofy SyFy movie! I’m also a big fan of Cheez Its (go to snack) and Sherbet (go to comfort food)


Q:

Is is possible that your laundry soap is the problem?

A:

I have used the same detergent for a very long time. One time we switched and my hives went crazy the next day. We switched back immediately and they were like any other day. I’d have to say my current brand is fine, but it was a good idea to look out for :)


Q:

Have you tried AIP?

A:

I have not, but just looked it up! Right now, it’s gonna be a little hard to be on a diet considering I’m about 20 pounds underweight. But, I will look into possibly slowly getting into this diet !


Q:

It's not necessarily a weight loss diet (but can be). If you eat plenty of good carbs and good fats you shouldn't lose any weight.

Good luck!

A:

Thank you so much! Many people have told me about diets, but I have been too scared to try any. Hopefully I can start up over this winter break :)


Q:
  1. Have you taken a genetics test in regards to allergies?
  2. What type of fabric irritates you the least?
  3. What is your blood type?

I hope you find some relief

A:
  1. No genetics tests have been taken, and I currently know of no one in my family having anything like what I have
  2. Different detergents irritate me, but I try to keep light clothing on. Also, I can’t wear long sleeves or knitted sweaters because it will cause them
  3. B+

Q:

Do you drink a lot of diet soft drinks?

A:

I was drinking a Coke a day when college started, but I started getting chest pains which stopped when I stopped drinking it.


Q:

Are your glasses Gucci? You’re beautiful btw! :)

A:

Yes they are! My mom sells glasses, so discounts yo! Also, thank you very very much :)